90% choose to terminate?

As having been recently received the news that our son will be born with Downs (I am at 14 wk pregnant), I have been on the computer a lot doing research. I have read from numerous sources that a vast majority (90%) choose to terminate their pregnancy after receiving the diagnosis. I am not judging anyone's personal decision whether to terminate or not. My husband and I are adamant that unless my life is in danger we will bring this baby into the world and that is that. However, being so early in this diagnosis and knowing all the ultrasounds and doctor/specialists visits that are likely in our future before the baby is born, I am fearful that at times my resolve to keep my baby might be tested. I am just curious to hear from moms who decided to keep their baby if they faced times during their pregnancy when doctors or specialists lead them to feel that their situation was so dire that terminations might be the only good (merficul?) option. How is your life now with your child? Any words of encouragement would be greatly appreciated.

Comments (7)

That stat, though widely shared, is too high according to the most recent research. In some areas of the country, it is believed to be far less than 50% (in my area the genetic councelors suggest that the number is more like 10%.)

I'll ping Nancy (reader1234) to respond. She was offered termination many times during her pregnancy. It felt like "pushing" to her because it was offered so many times by the many doctors she saw. There is information on how to respond to this sort of pushing this the free book on Downsyndromepregnancy.org.

My OB - who is my personal friend - was very respectful of me and our decision (she had delivered several other children with Ds, and knew that their families were doing well. Those families are now my friends!) One reason I stick around on this board after almost 6 years is that other moms have such a different experience than mine. My life has been far different - in a positive way - than anything the doomsday doctors who don't have an individual with Ds that they know, are related to or are friends with or know more than what is in the page they read in a medical book many years ago on the subject.

Medical issues can be very difficult. But the vast, vast majority of parents of children with Down syndrome do very well, and love their children. Dr. Skoto's research might be very helpful for you, and something to present to anyone who advises you negatively.

The thing to remember is that all of these studies were done with women who had invasive testing (amnio/CVS). Many women choose the invasive route because they know they would terminate. Many women who would not terminate choose against invasive testing. That makes the termination rate based on these studies seem higher than it really is for ALL Ds pregnancies.

I live in NYC and this stat was quoted to me several times when I received dx (11.5 weeks through CVS). Every single one of my OBs patients with a dx chose to terminate. I am the first patient who did not and my baby will be the first she delivers with DS. They tested my resolve, they made me think I was crazy -- all of it. It was awful. You have to do what you think it right. I was so confused for so many weeks, I didn't know what to do. But when the answer finally came to me, it was very clear and I haven't looked back on my decision to have my baby. I knew I would never, ever get over terminating and that I would never be the same if I did. I am scared s*itless about the future, FYI. And I hope that my baby will love me and be happy that he or she was born. But at least I can sleep at night knowing that my decision was made out of love.

*Please, all responding posters proceed with caution and please remember this is a conflict-free, drama-free board with a prohibition on political discussions, soap-boxing, and active decision-making discussions.*

Tara,

I was offered 4 times, and to me yes it felt like pressure (hey no means no) but all offers were within a three day time span, by 4 health care providers. In isolation, none were actually pressure but "just checking for the record." None of the providers would have registered that it would feel like pressure because they were each just saying it once with no pushing. It's just that on the receiving end it had a cumulative and negative impact. Once that was over, really I never heard that again, and the cardiologist who confirmed her heart defect did not bring it up thank goodness.

And yes, to repeat the 90% - that number actually varies geographically and is based on a polling of those who did invasive testing. Amy (group owner) and I would fall into the invasive testing group, as well as some of our other moms, and include those who did not/ would not make another choice, but many of those in that "would not" group decline invasive testing. So while Amy & I may be folded into the stats, people like Missy (declined invasive testing with 1 in 17 chances) would not be included. Thus the percentage varies, and does not accurately reflect the full diversity of those receiving information about a pregnancy.

As to that worry of shifting perspectives based on the potential for new/negative information, I assume that can happen, but it would not really be discussed here because of the rules of our board, which assumed "continuing" for every poster. Some moms who went through some "doubt" phases but overcame it may be able to chime in if they proceed with caution so as not to upset any of our pregnant moms.

One thing you will find as you go along is that if the docs do see any medical issues, likely some of our moms have been there done that and can share what they experienced and how their babies are doing now.

Hang in there! This is tough terrain to navigate, especially this early.

That figure is overestimated and I think based on one small, regional study.

We found out at 18 weeks and had TONS of ultrasounds. Seriously, I couldn't even guess how many. We were asked once and we said not to bring it up again or we'd find a new hospital. From them on we had wonderfully supportive doctors!

Warning - this board is not a platform for soap-boxing. We want to respect the expectant moms' need to explore certain issues, but their questions should not be used as an opportunity by experienced moms to vent. This is not the place for that.

Also, for many moms a DS diagnosis in pregnancy does lead to different prenatal care, some of which has saved the lives of some of our babies.

While none of us views the births of our babies as a "tragedy" we give full respect to the spectrum of emotions our expectant parents have, and assure them their emotions are both natural and expected, but not reflective of the future. Comments that DS is "no big deal" can rub expectant parents the wrong way, and may be taken as judgment on their feelings of sadness.

Pregnancy post-diagnosis has its own set of issues that may not be understood by all members of the DS community.

WE are not here to push expectant parents into a state of acceptance, satisfaction, or bliss. Expectant parents work through emotions in a fairly predictible pattern, and we are here to gently help them through it - no pushing of agendas, no attempts to push them into a emotional state they are not yet ready for.

I'm sorry ladies, I know the OP's question came from the heart, but we have had a watch on the thread due to the subject matter (and its historic potential) so I'm going to freeze it. Anyone who had experiences in pregnancy post-diagnosis which may help the OP should PM her. Thanks!